The Rare Disease Advisory Council advises the Governor, the Legislature, and the Department of Public Health on the incidence of rare disease within the Commonwealth and the status of the rare disease community.
Current members
Membership as of June 10, 2025
| Representing | Council Members |
|---|---|
| The Department of Public Health Commissioner, or a designee, who shall serve as chair | Dylan Tierney, MD, MPH |
| The executive director, or a designee, of the health policy commission | Yue Huang, MS |
| Member of the Senate, or a designee | Senator Paul Feeney |
| Member of the Senate, or a designee, whom shall be appointed by the minority leader of the senate | Senator Bruce Tarr, represented by Tai Pasquini, MPA, PhD |
| Member of the House of Representatives or a designee | Representative Jay Livingstone |
| Member of the House of Representatives, or a designee, whom shall be appointed by the minority leader of the house | Representative Joseph McKenna |
| A pharmacist with experience with drugs used to treat rare diseases, whom shall be appointed by the senate president | Shivang Patel, PharmD |
| A geneticist licensed and practicing in the commonwealth, whom shall be appointed by the senate president | Kristen Mahoney Shannon, MS, CGC |
| A registered nurse or advanced practice registered nurse licensed and practicing in the commonwealth with experience treating rare diseases, whom shall be appointed by the senate president | Lisa Jenike, DNP |
| Appointment of the senate president | Nicole Nyberg |
| A representative of a health plan or an accountable care organization certified by the health policy commission, whom shall be appointed by speaker of the house | Gail Ryan, PharmD |
| A genetic counselor with experience providing services for persons diagnosed with a rare disease, whom shall be appointed by the speaker of the house | Asma Rashid, MS, CGC |
| A representative from a rehabilitation facility that provides rare disease care, whom shall be appointed by the speaker of the house | Ross Zafonte, DO |
| Appointment of the speaker of the house | Melsada Valarie Molyneaux |
| A representative from an academic institution that receives grant funding for rare disease research, who shall be appointed by the governor | Heather Gray-Edwards, DVM, PhD |
| A representative from an academic institution that receives grant funding for rare disease research, who shall be appointed by the governor | Andrew Dwyer, PhD, FNP-BC, FNAP, FAAN |
| A physician licensed and practicing in the commonwealth with experience researching, diagnosing, and treating rare diseases, whom shall be appointed by the governor | Olaf Bodamer, MD, PhD, FACMG |
| A physician licensed and practicing in the commonwealth with experience researching, diagnosing, and treating rare diseases, whom shall be appointed by the governor | Christelle Moufawad El Achkar, MD |
| A hospital administrator or a designee from a hospital in the commonwealth that provides care to persons diagnosed with a rare disease, whom shall be appointed by the governor | Ryan Thompson, MD |
| A hospital administrator or a designee from a hospital in the commonwealth that provides care to persons diagnosed with a rare disease and in which the scope of service focuses on rare diseases of pediatric patients, whom shall be appointed by the governor | Stacey C Cook, MD, PhD |
| A representative of a rare disease patient organization that operates in the commonwealth, whom shall be appointed by the governor | Julie Gortze, RN |
| A representative of a rare disease patient organization that operates in the commonwealth, whom shall be appointed by the governor | Vacant |
| A representative of a rare disease patient organization that operates in the commonwealth, whom shall be appointed by the governor | Jenn McNary |
| A representative of the biotechnology and scientific community who is engaged in rare disease research, including, but not limited to, a medical researcher with experience conducting research on rare diseases, whom shall be appointed by the governor | Jeff Livingstone, PhD |
| A representative of the biotechnology and scientific community who is engaged in rare disease research, including, but not limited to, a medical researcher with experience conducting research on rare diseases, whom shall be appointed by the governor | Robert Schultz, MBA |
| A dietician licensed and practicing in the commonwealth with experience administering dietary therapies to those with rare diseases, whom shall be appointed by the governor | Alison Griffin, MS,RD,CSO,CNSC, LDN |
| A person age 18 or older who has been diagnosed with a rare disease, whom shall be appointed by the governor | Glenda Thomas |
| A person age 18 or older who has been diagnosed with a rare disease, whom shall be appointed by the governor | Vacant |
| A person age 18 or older who is a caregiver or a person with a rare disease, whom shall be appointed by the governor | Alexsandra Mahady |